My Life in Ankylosing Spondylitis Remission
I was skimming the notes from my recent rheumatology appointment when I saw the word.
“Remission.” A word I’d heard used most often to describe cancer patients, but also to describe ankylosing spondylitis patients with low disease activity. And now, me.
Remission had always seemed more like a myth than a possibility to me
How could a disease so permanent, progressive, and frequently life-ruining ever be described with such a relief-evoking word? Although I knew that the ideal outcome of Ankylosing spondylitis treatment was remission, it never felt within reach, or when it did, a surge of pain would quickly shatter that fantasy.
It happened over the course of several years. I started biologic injections in 2018. My pain decreased, but still interfered with my daily life for the next three years. Sometime in 2021, I noticed that my pain was very manageable, and had been for a while. In fact, it was so manageable that it felt too good to be true. I was suspicious of my own body, waiting for the jig to be up — but the bliss has only continued since then. I can walk, exercise, and skate with relative ease, and although I wait for the inevitable decline, it hasn’t come yet.
Until I was reading my rheumatologist’s notes, I never described myself as being in “remission,” because I wasn’t aware that I was. I had just been telling my friends and family that my pain was very well-managed. When I read the notes, it clicked — wow, this is remission. My manageable pain is the ideal outcome that I once deemed unattainable.
My AS will never be completely gone
I say “manageable,” instead of “better” or “gone,” because my AS will never get completely better and it will never be gone. Even as I sit here writing this article, in my state of remission, I feel the faint burning in my lower back that I always do. I still get jolts of pain and fatigue, I still can’t stand for more than 10 minutes without pain, and I am still limited in the activities I can do. But now, my AS is more like a dog that follows me around and bites at my ankles than the fang-toothed monster it once was.
I can do so many things now that I couldn’t before I started my biologic four years ago — like walking without a limp, exercising without taking a pain pill first, and enjoying life for hours at a time without pain even crossing my mind. This near-normal life — interrupted only by my regular self-injections — is the best that this disease can get.
But unfortunately, another thing to remember about “remission” is that “temporary” is in its definition. My AS activity is currently low, but it could return at full force at any point. AS is notoriously unpredictable and remission makes no promises. I’m worried that writing this article will “jinx” it and I’ll wake up tomorrow morning back at square one.
But even if that were to happen, I would be grateful for the past year that I’ve had in remission — every leisurely walk in the sun, every party I didn’t have to leave early, every thought and feeling that wasn’t clouded by unbearable pain. I hope there are more years like this to come.
How much about your AS do you share with others?